Caregiving Full-Time and Working Full-Time: Managing Dual Roles and Responsibilities

By Dr. Keith Washington

How will Alzheimers disease affect your career?

Alzheimers-related caregiving duties present expected and unexpected costs for full-time employed caregivers, employers, and society. Research indicates that caregivers provide more than forty hours per week, caring for a relative with Alzheimers disease. The dual responsibilities and pressures of caregiving while remaining active in the general workforce may cause stress and loss of productivity at work. As the Alzheimers disease progresses in the patient, a caregiver is less likely to engage in more challenging workplace activities or accept additional roles of responsibility, promotions, or relocation opportunities. Just as the employed caregiver takes on a dual role when providing care for the Alzheimers patient, Alzheimers disease plays a dual role in depleting the life of both the patient and the caregiver. This book explores some of the challenges related to the dual roles of a working caregiver and the demands faced caring for a loved one with Alzheimers disease.

• Language: English
• Publisher: WestBow Press
• Release date: Jan 14, 2015
• ISBN: 9781490856650

Dr. Keith Washington

Dr. Washington has worked in various major corporations. He has held a series of leadership roles in Fortune 100 companies. He is a catalyst, devoted to reeducating adults and improving their quality of life. Dr. Washington holds a doctorate of management from the University of Phoenix.

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Copyright © 2014 Dr. Keith Washington.

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ISBN: 978-1-4908-5663-6 (sc)

ISBN: 978-1-4908-5664-3 (hc)

ISBN: 978-1-4908-5665-0 (e)

Library of Congress Control Number: 2014918622

WestBow Press rev. date: 01/13/2015

Contents

Abstract

Dedication

Chapter 1

Introduction

Background of the Problem

Statement of the Problem

Purpose of the Study

Significance of the Problem

Nature of the Study

Research Questions

Theoretical Framework

Definition of Terms

Scope

Assumptions, Limitations, and Delimitations

Summary

Chapter 2

Review of the Literature

Title Searches, Articles, Research Documents, and Journals

Historical Overview of Alzheimer’s Disease

Historical Overview of Institutional Care

Historical Overview of Unpaid Caregivers

The Twenty-First Century Unpaid Caregiver

Caregiver Gender Differences

Caregiver Racial Differences

Caregiver Home Implications

Caregiver Work Implications

Comparative Work Challenges of Caregivers

Employer, Leadership, and Human Resource Concerns

Beneficial Interventions

Suggestions for Future Research

Conclusions

Summary

Chapter 3

Method

Research Method and Design Appropriateness

Research Questions

Population and Sampling

Geographic Location

Informed Consent

Confidentiality

Instrumentation

Validity and Reliability

Data Collection

Data Analysis

Summary

Chapter 4

Presentation and Analysis of Data

Responses and Themes

Theme one: Employment challenges of caregivers

Theme two: Personal impact of caregiving

Theme three: Financial implications of dual-role caregivers

Summary

Chapter 5

Conclusions and Recommendations

Discussion of Research Process

Discussion of Thematic Findings

Theme one: Employment challenges of caregivers

Theme two: Personal impact of caregiving

Theme three: Financial implications of dual-role caregivers

Recommendations for Leadership

Suggestions for Future Research

Summary

References

Appendix A

Abstract

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Alzheimer’s related caregiving duties present expected and unexpected costs for full-time employed caregivers, employers, and society. The purpose of this qualitative, phenomenological study was to explore the problems related to the dual roles of a working caregiver and the demands faced when caring for a loved one with Alzheimer’s disease. The population for this study included caregivers that chose to continue maintaining full-time caregiver duties for a family member suffering from Alzheimer’s disease while simultaneously continuing full-time careers. The qualitative research and design methodology was applied for this study because the qualitative phenomenology design method facilitated an exploration of the living experiences of caregivers maintaining the dual roles of employees and caregivers. The data collected for this study from the fourteen participants resulted from a rigorous process to ensure that the experiences of the participants were reflected accurately in the output of the data collection process. The data analysis process consisted of interpreting the information collected and analyzed through the research process as well as synthesizing the literature compiled for this study along with the information obtained from the study participants. Post review of the data using the NVivo software yielded the following themes from the open-ended questions: (a) employment challenges, (b) home restrictions for the caregiver, (c) time restrictions, and (d) financial restrictions. The findings led to recommendations for leadership and suggestions for future research from the organizational perspective to support Alzheimer’s caregivers maintaining the dual roles of caregivers and full-time employees.

Dedication

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This study is dedicated to the memory of my father, Edward Washington Jr., who was diagnosed with Alzheimer’s disease and passed away in March of 2012, and my mother, Doris Washington, who was his caregiver. Both parents were my inspiration for this study in hopes that it will add to the body of knowledge for Alzheimer’s caregiving. This study is also dedicated to my wife and my children because their love, patience, and unending support made this journey possible.

Chapter 1

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Introduction

Many caregivers of Alzheimer’s patients face the challenge of balancing employment responsibilities with the care they are required to provide for their elder relatives with Alzheimer’s disease (Sander, 2009). The financial challenges associated with providing Alzheimer’s patient care are staggering, whether the patient is in an institution or at home (Fox & Max, 2009). The effects of Alzheimer’s disease extend beyond the patient’s health-care bills into the personal and professional lives of patient caregivers (Adams, 2006; Gubrium, 1988). The additional responsibility of caring for a relative suffering from Alzheimer’s disease presents an often overwhelming burden on the caregiver (Thomas et al., 2002). Where, prior to Alzheimer’s disease attacking a family member, a caregiver may have previously focused on employment and career goals, the focus shifts to include caregiving requirements for the Alzheimer’s patient (Pitsenberger, 2006).

Chapter 1 contains background information on the challenges confronted by employed Alzheimer’s caregivers, a statement of the specific problem, the purpose of the qualitative study, and the significance of the problem. In addition, the discussion contains the significance of the employment challenges faced by caregivers of Alzheimer’s patients and the significance of the study to leadership. Discussions of the research method and design follow, detailing the appropriateness of the qualitative method and design for the exploration of the employment challenges faced by Alzheimer’s disease caregivers. Chapter 1 includes the nature of the study, the research questions, and the theoretical framework relative to the employment challenges of Alzheimer’s caregivers.

Background of the Problem

According to the US Center for Disease Control and Prevention (2011), approximately five million Americans live with the medical diagnosis of Alzheimer’s disease. The American health-care system has the expectation that a family member provided the primary care for those patients affected with Alzheimer’s disease (Sherman & Bauer, 2008). However, the implicit expectations of family caregiving lead to additional employment challenges that caregivers face when tasked with providing primary care for relatives with Alzheimer’s disease (Krouse & Afifi, 2007).

Three stages of Alzheimer’s disease affect patients: severe, moderate, and mild. Alzheimer’s disease debilitates the level of self-support in the Alzheimer’s patient without the patient’s knowledge. Therefore, persons afflicted with the disease require assistance from caregivers. Patients at the different stages require corresponding levels of assistance from caregivers, depending on the progression level of the disease (Handy & Quillen, 2002). Full-time employed caregivers face a variety of changing challenges, along with balancing full-time careers with caregiving activities, because of the progression of the disease (James, 2009).

Alzheimer’s disease presents several challenges for the familial primary caregivers (Sander, 2009). A caregiver is tasked with a financial need to go to work but must also stay home to provide care for the Alzheimer’s patient (Calvasina, Calvasina, & Calvasina, 2010). The additional responsibility of caring for an Alzheimer’s patient creates work and home implications for the caregiver. Together, the work and home implications create a financial dilemma (Sogaard et al., 2009).

Financial implications are sometimes the determining factor for the levels and amount of care that Alzheimer’s patients receive (Fairchild & Lyon, 2008). For example, in some cases, hospitals are the choice of care for Alzheimer’s patients but only if patients or their families can afford the treatments. In other instances, Alzheimer’s patients receive part-time or a full-time care in nursing homes. When hospitals and nursing homes are not options for Alzheimer’s patient care due to cost constraints, the remaining option is patient reliance on relatives as primary caregivers (Lynott, 1983).

Although the selection of a relative to serve as the primary caregiver may result from the financial limitation of the patient, the personal choice not to place a family member in public or private nursing care facilities is a part of the decision as well. Whether a financial or personal choice, when relatives inherit primary caregiver responsibilities for Alzheimer’s patients, some relatives may need to make life adjustments in order to provide the levels of care required (Fairchild & Lyon, 2008). Life adjustments in the context of an Alzheimer’s patient caregiver may relate to the time the caregiver has to spend with the patient in addition to the time the caregiver has to spend at work, away from the patient (Branghman, 2006).

Although much attention focuses on the debilitating effects of Alzheimer’s disease on the patient, early literature highlighted the need to study the negative financial and physical effects of Alzheimer’s disease on the caregivers (Lynott, 1983). Lynott (1983) claimed that many of the decisions of caregivers to institutionalize relatives with Alzheimer’s disease resulted from the emotional challenges that reach threshold tolerance levels. The decision to institutionalize a relative with Alzheimer’s disease may initiate from a work-life challenge and increased physical and financial responsibilities carried by the caregiver (Boutoleau-Bretonnière, Vercelletto, Volteau, Renou, & Lamy, 2008).

Research indicated that a caregiver provided more than forty hours per week caring for a relative with Alzheimer’s disease (Fox & Max, 2009). The dual responsibilities and pressures of caregiving while remaining active in the general workforce may cause stress and loss of productivity at work (McSweeney, 2005). As the Alzheimer’s disease progresses in the patient, a caregiver is less likely to engage in more challenging workplace activities or accept additional roles of responsibility, promotions, or relocation opportunities (Fairchild & Lyon, 2008). Just as the employed caregiver takes on a dual role when providing care for the Alzheimer’s patient, Alzheimer’s disease plays a dual role in depleting the life of both the patient and the caregiver (Manepalli, Desai, & Sharma, 2009). The results are employment-related financial challenges for the caregiver as well as additional home and work implications.

Statement of the Problem

Alzheimer’s related caregiving duties present expected and unexpected costs for full-time employed caregivers, employers, and society (Sogaard et al., 2009). Research demonstrated that 66 percent of Alzheimer’s patient caregivers take time off from work to provide the support needed by the relatives suffering from Alzheimer’s disease (McSweeney, 2005). The lost revenues of a working caregiver can exceed three hundred thousand dollars over a lifetime (Albert & Schulz, 2010). The problem includes the high costs to employers, employees, and society related to full-time employed workers who are also providing care to their relatives suffering from Alzheimer’s disease (Bainbridge et al., 2006).

In some instances, working caregivers must abandon the patients for whom they provide care because they cannot afford to be away from their employment responsibilities (Reid, Stajduhar, & Chappell, 2009). The alternative is that working caregivers must make adjustments or separate from their employment and incur whatever challenges and losses that arise as a result of their employment decisions regarding work hours and work adjustments (Reid et al., 2009). Working caregivers frequently decrease their work hours from full time to part time, resulting in decreased compensations (Timmermann, 2010). Other employment-related issues include the economic disadvantages of incurring the loss of career advancement opportunities for caregivers as the result of providing patient care (Fox & Max, 2009). In addition to the loss of hours worked, there may be a related loss of benefits, loss of candidacy for promotional opportunities, and loss of pension benefits, possibly resulting in the eventual abandonment of the caregiver’s employment (Neal & Wagner, 2002). Multiplying the lost wages, pension amounts, and benefits by the nine million caregivers who provide care for elderly relatives results in a staggering three trillion-dollar loss (Albert & Schulz, 2010).

The deterioration of physical well-being as well as financial well-being may result from the caregiver’s dual role of full-time caregiver and employee (Fairchild & Lyon, 2008). Caring for elderly relatives with Alzheimer’s disease requires exhaustive and extensive time commitments from the caregivers who have full-time employment outside of their patient caregiving duties (Fox & Max, 2009). Family pressures also exist among caregivers that maintain the dual responsibilities of working in the traditional job sector while providing care for elderly relatives suffering from Alzheimer’s disease (Sherman & Bauer, 2008).

Caregivers commonly experience emotional strain from the need to leave their relatives suffering from Alzheimer’s disease for the purposes of work (Yu-Nu, Yea-Ing Lotus, Min-Chi, & Pei-Shan, 2011). The alternatives for help can be prohibitively expensive (Brummel-Smith, 2001). For example, if the caregiver chose to use home health care to supplement the challenge of care, the caregiver would incur a cost of approximately twenty-one dollars per hour for in-home care, which is the average cost for in-home services (Fox & Max, 2009). If the caregiver chooses to abandon patient caregiving duties and places the relative in a full-time care facility, the cost is approximately eighty thousand dollars per year (Timmermann, 2010). The related problem is the trillions of direct and indirect dollars lost by working caregivers because they cannot afford these alternatives and choose to provide care on their own, thereby jeopardizing their own professional and financial well-being (Albert & Schulz, 2010; Fox & Max, 2009).

Business related problems resulting from the working caregiver with dual responsibilities include those additional issues faced by a caregiver’s employer. For example, the organization may be left with the challenge of managing a resource with a sometimes erratic schedule due to the conflicting responsibilities of full-time caregiving and full-time work (Albert & Schulz, 2010). The business and work implications also stem from the insurance industry supporting both the employee benefits relating to family medical leaves for Alzheimer’s issues and the insurance coverage of the patients. For example, the time off from work taken by the caregiver to provide care for their family member suffering from Alzheimer’s disease creates an illusion of free care for the patient within the health-care industry. The cost is a real cost that exists within the realm of the informal caregiving community (Zhu et al., 2006). The family member engaged in